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Home Care Workers Are Essential to People with Heart Failure

February 4, 2019

The Centers for Disease Control and Prevention estimates that about 6 million adults in the U.S. deal with heart failure, which is responsible for roughly one in nine deaths in this country. Heart failure also challenges the health care system and the economy—incurring $30.7 billion in annual costs such as medications, services, and lost work hours, among others.

Home care workers, who serve as the paid frontline of care for millions of older people and people with disabilities, are uniquely positioned to support clients with heart failure, improving health outcomes and potentially reducing costs for the broader health care system.

Unfortunately, our long-term care system does not adequately invest in training, supporting, or maximizing the roles of home care workers to take on this sizable health concern. A new study in the December issue of the Journal of the American Heart Association sheds light on this topic, pointing to possible solutions for the home care sector.

I spoke recently with Madeline Sterling, MD—the lead researcher on this study, and an Assistant Professor of Medicine at Weill Cornell Medicine—about the study’s findings. How can our country better support adults living with heart failure and their home care workers? Here’s what she had to say.

Tell me a bit about yourself. How did you become a general internist and a researcher?

I’ve wanted to be a general internist for as long as I can remember. To me, taking care of the entire person, diagnosing and treating a variety of symptoms, and forming long-lasting relationships with patients and their families was the ideal job. As a physician that conducts research, I also have the unique opportunity to investigate issues that affect my patients’ health at the population level. This is extremely gratifying since research has the potential to impact patient care, health care delivery, and health policy.

Madeline R. Sterling, MD, MPH, MS is an Assistant Professor of Medicine at Weill Cornell Medicine in New York, NY. She is a board-certified general internist and a health services researcher. Follow her on Twitter: @mad_sters

Why did you develop an interest in the topic of home care workers?

I’m interested in home care workers because they help to care for my patients. Quite frankly, they spend a lot more time with patients than I do as a physician!  I think what surprises me though, is how infrequently they are a part of the conversation in health care and the patients’ medical team.

You recently published the results of a study in the Journal of the American Heart Association. What were you seeking to learn?

The main goal of the study was to understand the perspectives of home care workers—home health aides and personal care aides—caring for adults with heart failure. Unfortunately, patients with this condition are in and out of the hospital a lot. It’s bad for their health and very costly for the health system. Figuring out ways to keep heart failure patients home with optimal quality of life has been a research focus of mine for the last few years. It turns out that 1 out of 4 patients with heart failure receives home health care services. So I began to wonder, could those caring for them at home be part of the solution?

Has this research topic been widely explored in the field?

Interestingly, there hasn’t been much research on home care workers caring for heart failure patients. Since these workers are often the minute-to-minute observers of patients in the home, we were interested in understanding their perspectives first hand. Specifically, what is it like caring for these patients? What aspects of heart failure care do they assist patients with? What are the challenges? What are some opportunities to improve their ability to provide care?

Why is this topic important to the public and the health care system?

This study is the first step towards understanding how this workforce contributes to heart failure patients’ care in the home. Should they have a high degree of involvement, home care workers could potentially be impacting patients’ health behaviors (such as adherence to diet and medications) and ultimately their health outcomes (such as quality of life, hospitalizations, and readmissions).

For people interested in your research approach, can you describe your methodology?

We conducted this qualitative study in partnership with the 1199SEIU Home Care Industry Education Fund, a training and education benefit fund of 1199SEIU United Healthcare Workers East, a local of the Service Employees International Union, the largest health care union in the U.S. The leadership was extremely supportive of the study and their staff helped us recruit home care workers from 21 unique agencies across New York City to participate. The sample was incredibly diverse in age, race/ethnicity, language spoken (with nearly half speaking Spanish), and years of employment.

What did your study discover?

Overall, we found that home care workers are highly involved in patients’ self-care regarding heart failure. We found that they help patients with a variety of activities that are necessary, such as preparing low salt meals, reminding patients to take medications, measuring their blood pressure, and transporting patients to and from the doctor’s office. Despite this level of involvement, we found that the majority of home care workers have not received heart failure-specific training or resources. In addition, few felt confident caring for these patients. We also found that caring for patients came with additional challenges, such as an inability to reach their supervising nurses by phone when they had clinical questions or required help. In addition, they often found the plan of care to be inadequately detailed for heart failure management.

Did you encounter any surprising results?

In addition to the scientific findings, we were really impressed with the enthusiasm and engagement of the home care workers. At the end of the study we presented the findings to participants and asked them for feedback and their thoughts on next steps. Several home care workers from this initial study are now “ambassadors” to my research team, participating in some of our regular meetings and offering their opinions and expertise. I continue to be impressed by their dedication to patient care, their eagerness to learn, and their desire to be included in research.

Q: Our interventions have shown that home care workers can play a particularly important role in supporting a client’s interdisciplinary care team—improving communication and providing valuable perspectives. What did your study find in regard to this approach?

This may be a particularly important point in heart failure since adults with this condition are in frequent contact with the healthcare system and are often cared for by many healthcare providers. Home care workers in our study expressed a lot of frustration with the current state of team integration and communication. Despite spending so much time with heart failure patients, the majority of workers felt as if their perspectives were not heard or valued by other healthcare providers. In addition, many felt that their role was not well understood by patients, family caregivers, nurses, and physicians. My team and I are currently working on how to address these issues and better integrate home care workers into the patients’ care team, since they certainly have valuable insights and make important contributions to patient care.

What would you like the health and long-term care fields to take away from your study?

A couple of things. First, I think our study helps raise awareness of home care workers to the medical community. This is important, since health care providers may be unaware that home care workers are assisting patients with medically-oriented tasks in the home. After reading our study, clinicians might start asking their heart failure patients: Who is helping you at home? What do they help you with? Did they receive instructions on how to cook your dinner with low salt? What happens when they take your blood pressure? If indeed a home health aide is involved (and if the patient allows), physicians could consider including the aide in the office visit or during the medical encounter in the emergency room. Our results suggest that home care workers have a deep appreciation for how their patients are doing – often noticing minute-to-minute changes. They also are aware of patients’ functional and cognitive status. Patients may not be aware of subtle changes and sometimes family members are not either. This detailed information could be important to a physician. So, when appropriate, integrating the home care worker into medical encounters and eventually the medical team could be quite valuable clinically.

Any additional lessons for the field?

Our study also identified several challenges that home care workers face while caring for this patient population. Some of these challenges are easier to address than others, of course. One example: we found that many home care workers lacked educational resources on heart failure and many voiced interest in a training course specific to the condition. An educational course could be developed to meet their needs (something we are working on now actually!) and might improve their overall confidence caring for these patients.

February is National American Heart Month. What are a few ideas you would want policymakers in this country to adopt in order to improve workforce supports for people dealing with heart failure?

I think policies that promote quality training on heart failure and other cardiovascular conditions are important for home care workers, since these are conditions that they are increasingly seeing and assisting with in the community. Training standards for home care workers vary significantly across the country by type of home care worker (home health care aide vs. personal care aide) and by state, and these standards could use strengthening. Policymakers should fund education on this condition (and others) for which home care workers are frequently involved. I think this would be empowering to workers and improve their self-efficacy and patient care. Beyond training and education, there is a general lack of robust data on this workforce and how they are assisting patients, including those dealing with heart failure. Policies that improve the quality and availability of data are necessary to inform health care delivery, payment (and reimbursement) policies, and research interventions.

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